Monday, September 24, 2012
Several people have sent me a link to a story published in the New York Times about this research:
Those of us "lucky" enough to be survivors of this disease talk about what is behind this research all the time, even though we are not "experts." We know that this is not one disease. We tell each other, my cancer is so different than yours. I think to myself, I had none of the risk factors (except for early menses, long-term birth control pill use and recent pregnancy/nursing; those latter two having only recently entered the general conversation about risk factors) associated with estrogen-positive cancer. We question why some of us live and some of us die.
And lo and behold, when I talked about the fact that "triple negative breast cancer doesn't exist," it looks like I might have been right. And with that potential truth lies the possibility for treatment for TNBC that will be effective, rather than just a shot in the dark. And yet... how should I feel about learning this? And by this I mean THIS:
The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer.
But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer. “It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause.”
There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.”
I mean, WOW. So maybe I have more in common with lung cancer and ovarian cancer patients than breast cancer survivors. Those two types of cancer are much deadlier, so that doesn't make me feel better. In the absurd land of cancer, I kind of liked being in the camp where a decent percentage of people survived for a long time. Moreover, it's possible that every single sentence that anyone utters about breast cancer--causes, risk factors, lifestyle fixes to prevent recurrence, treatment, survival rates--is completely meaningless for me and others like me.
And then, there's the thought I almost can't bear to mention:
I might have done chemo for nothing.
Well, at least I might have done AC chemo for nothing. Taxanes might still be a must for triple negative--I do believe they are used for other cancers, such as ovarian, as well. But adriamicin? The one that gave Robin Roberts a potentially fatal blood disease that used to be called pre-leukemia? The one that just completely knocked me on my ass, sent me into early menopause, took my "epic" hair and made me so weak and skinny I couldn't feed my baby his lunch without using two hands? The drug that robs so many women of their fertility--forever? The one that can stop your heart?
It doesn't do any good, probably, for TNBC. Even when I was in treatment two years ago, there was a little bit of a sense that I had to do it because they didn't know better, nor what else to do for me. I was given "options," but none of them involved anything less than months of toxic chemotherapy. And the drugs that do work, these PARP inhibitors, have been around for a while--I remember hearing about them soon after my diagnosis. They were discussed as promising for TNBC but because no clinical trials had been done en masse, they weren't even mentioned to me by doctors. And now, since I'm almost 2.5 years out, it's probably too late. I sit here, itching to pick up the phone and call my oncologist and demand some PARP right now! but I know that he would say something along the lines of "that is not the standard of care today" or "trials are still underway" or "that is all behind you now." But, of course, it isn't behind me. It's right here with me, all the time. And the same woman who wants to pick up that phone is terrified that it might ring, because she doesn't WANT more drugs, she loves how her body feels now, and she wants to just be left alone to her chances.
It's hard to feel so many things at once, all the time, when you're just trying to live your life. I'm so happy that they are figuring this out, that future generations of women will not have to take treatments that cannot possibly help them, and that hopefully fewer women will die from a disease that has been around forever, but that is woefully misunderstood. I think about my daughter, and I might almost weep from relief, if I were a different woman.
But I'm not, so I sit here dry-eyed and think about some of the absurdity. About taking poison for no reason. About staying skinny and exercising in order to stop the chaos in my mind and the jumpiness in my body, not to stave off cancer--because, again, there is no evidence that those things help stop recurrence for TNBC. About how hard it is, sometimes, to relate to people. Because every day I do something that few people do. I just cross my fingers before I shut my eyes to sleep, knowing that I will at least wake in the morning.
I cross my fingers for one more day and that small action is as likely as anything to give me more wakefulness. I live in this Kafka-esque world, where I know that everything I have done, except for surgery, was a best guess fix for a what if scenario for a nameless disease.
And yet, I'm glad I did it--all of it. I did my best with the information available to me at the time. I did what I could, and more than I would have liked. And my body, my hair, my fertility and my sexuality came back to me. For a time at least-- for now. Who can guess when our best things will be taken away? It is useless to dwell on the possibilities.
And so I cross my fingers and bust my ass and on my best days, you would never know. On other days, like today, I feel grateful and I feel betrayed, I feel happy and I feel devastated, I feel afraid and I feel that it is impossible that I might not get to grow old. So, I write this. And then I move on.
Sunday, September 16, 2012
For the second time, a guest post from Martha Jacob! This is in response to the post I wrote yesterday called Guilt.
I remember this:
a little girl (you) who for her seventh Christmas wanted a knock-off Cabbage Patch doll.
a mom (me) who was so excited. Now we (you and I) could play house, dress the baby, feed the baby, put the baby to bed. I got out my doll crib and high chair from my childhood. Fixed them up for the doll you had already named (Sarah Winnemucca Marthagene Jacob), the doll I imagined would be “our” baby.
the Christmas morning when you unwrapped Sarah and her wardrobe (picked out by a Santa mom who couldn’t wait to help you dress her). You were so happy. So was I. Now, I said, you (we) can play house. You can dress Sarah. Feed Sarah. Put Sarah to bed.
the little girl (you) who looked at her stay-at-home mom (me) and said with an incredulous look Mommy, what are you talking about? Sarah is six. She is going to school. I am going to work. I am not going to play house.
wondering, hmmm, let’s see. Your role model (I thought) was me. I’m a stay at home mom, I thought. Most of the mothers in this neighborhood are stay at home moms. You never watch tv (you never sat still long enough). The only mom you know who works is….Grandma Marthagene. Hmmm…. and you loved Grandma Marthagene to death and you went to visit her at work and, hmmmm.
a mom (me) who dressed Sarah Winnemucca Marthagene and fed Sarah Winnemucca Marthagene. She did sleep with you, but stuffed animals slept in her crib. You never played house. She went to restaurants with us, but you never played house. She went everywhere with you, but you never played house.
thinking Oh she’s missing so much.
But of course, you weren’t. You were who you are.
I also remember this:
a young mom from down the street who came to my house crying one evening when I was trying to make dinner. We sat on the porch swing. Dinner could wait. She was, after all, crying.
that new young mom saying How do you do it? How can you be happy being a stay at home mom? You always seem so happy. I hate it. I can’t do this. I love my son, but I can’t stand staying at home.
listening to her go on for awhile and then saying Then why are you staying home?
her incredulous look when she said Isn’t that what I’m supposed to do?
saying No, you’re supposed to do what makes you happy because that’s what will make your baby happy. Unhappy moms make unhappy babies.
her saying But I’ll feel guilty.
my saying But you shouldn’t. You will be doing the best thing you can for both of you and your son will love you as much as if you stayed home. You’re his mother. No one else is that.
my saying Look sometimes I feel so selfish. I always wanted to play house. I get to play real house now. We would have more money if I worked, be better off probably, but this is ALWAYS what I wanted to do. I get to dress dolls and feed dolls and put dolls to bed. Real dolls. But I also get to do whatever else I want. It so happens I like housework, but if I want to do some project around the house (and I always wanted to do some project around the house), I do. I should probably feel guilty because I have this freedom (I didn’t). It isn’t freedom to you, it’s jail.
my saying Get out of jail and be happy.
her saying Thank you, but I just don’t know what I should do.
my dinner being late that night. My thinking I hope she goes back to work. And, as I found out soon, indeed, she took my advice and went back to work.
that young mom coming over weeks later and saying Thank you. I’m so much happier. And sometimes I feel guilty. But mostly I feel ok. I love to work. I’m so much happier. And she was and she never came crying at dinnertime again.
Both are true stories.
You were, apparently, always going to work outside of the home. You are who you were.
No one asks a dad if he feels guilty not being home with his kids. No one blames a dad if he doesn’t stay home with his kids – or take paternity leave or watch football at night and ignore the kids or whatever other stereotypes there are about dads out there.
I remember this:
a tiny little girl (Lenny) who pined so terribly (broke my heart) when I stayed with her for a weekend while you and Gabe went to California. She stared at your pictures, couldn’t go through the picture album that Gabe had made about her first year enough. She stared up at airplanes in the sky when we went for walks. Mommy and Daddy took an airplane like that to California I told her. And they’ll take another one home to you very soon I would say every time.
thinking She must think I’m out of my mind. She was what one and a half? Mommy and Daddy are in that tiny little thing? How, she must have thought, can that be? But still every time we went outside, she looked up for that airplane and Mommy and Daddy.
a tiny little girl running into your arms (first) when you got home saying Mommy Mommy!
you, a working mom, having a little girl who loved you so much.
The debate is worthless. Children who are loved love their parents and want their parents to be happy too.
Guilt is fruitless. For whatever it is spent on, it is lost on. It is fruitless.
and any kind of guilt about anything for anyone who has cancer is more than fruitless. However you or anyone gets through it is no one’s business but your own. If one out of three or four of us will one day have to deal with cancer in our own way, then we will deal with it in our own way.
I wouldn’t have you any other way. Lenny and Augie wouldn’t have you any other way. You wouldn’t have had me any other way. However we did it or are doing it now, it works.
I could feel guilty because I don’t help out with the grandkids that much or quit work so I can help out when times are tough (and boy have they been tough in the last few years).
But, hell. I always did hate to babysit when I was a kid. Loved being that stay at home mom – but the operative words were stay at MY home mom. Doing what I wanted.
I will always be there when you need me, but my days of playing house are pretty much over (although I do still love housework). I didn’t go back for a Ph.D. for nothing. By the time I quit work you won’t need the kind of help you need now that the kids are small.
I bet you love me as much as before. I bet Lenny and Augie love me as much as they always have. Don’t have any doubt about either.
And, you know what? No guilt.
Saturday, September 15, 2012
And I began to realize something. So often, women talk about how guilty they feel as parents. Guilty that they don't spend enough quality time with their kids, guilty for working, guilty for staying home, guilty for having someone else watch the kids, guilty for carving out time for themselves.
I have never felt like that.
I struggled quite a bit when I went back to work when Lenny wasn't even three months old. I had to do it--Gabe was self employed, my income was steady, and I held the health insurance. Also, I wanted to work--just not that early in her life. It's absolutely ridiculous that we as a society think a 12 week old baby is old enough to be left with anyone but the basic food source, but, hey, that's America. I worried about her because she took so damn long to drink a bottle and I knew they wouldn't spend that much time with her. How could they? I was right--she was always so hungry when she got home. I remember kissing her before I left for the office and feeling a pang--but it wasn't guilt.
I knew I would be overwhelmed, and tired, and way too busy and I knew I would have to travel soon and the whole thing was really stressful.
But it wasn't guilt. I didn't feel guilty when I went back to work when Augie was six months old. I didn't feel guilty that I earned no income at all for four and a half of the months I was home with him, either. I didn't feel guilty that Gabe might have been one of the only dads alive to use a month of paternity leave to watch his baby by himself so the kid wouldn't have to start daycare until after New Year's.
But no guilt. I think it's the wrong word. Babies at that age don't need you. Now, they need SOMEONE. They need love, and nurturing, and they need to be fed and cared for and they need to learn how to be people in the world. But they don't need YOU. When I went back to work, Lenny was so little that she never knew any different, and Augie was a little pissed, but not nearly as angry as he would be a few short months later when his mom would stop nursing him all of a sudden. I liked working. I didn't really want to be home all day. I would have liked a few days a week at home--but not every day. Why should I feel guilty about that?
As a parent, I just don't feel like I have time for guilt. Growing up, my mom was home until I was about 11. And yet--I don't think she ever played with us, not really. She fed us, and talked to us. She colored with us when it rained. She sang to us on our front porch swing. But we played by ourselves or with our friends, and she did her own thing. I never resented that--that's just how it was.
So it's hard for me sometimes, when I hear other moms talk about how crucial it is to spend as much time actively engaged with your kids as you can, when I realize that Gabe is the one the kids play with, when I get confused when people tell me that everything changes when you have kids. I feel like I am supposed to feel guilty about not feeling guilty.
I didn't change when I had kids--not really. My life changed, sure. But me? I still read the newspaper in the morning and ignore everyone. I still yell at them to get out of the way when the game's on. I don't allow them in the kitchen when I'm cooking. I give them that mom look that I perfected years before I ever had kids (an ex boyfriend used to tell me he could feel me giving him that look through the phone) when they dare to come into our bedroom unannounced. I go on walks by myself because they're too slow to go with me. I spend a lot of time writing blog posts. I have never used baby talk--not ever, not even with other people's kids. I just talk to them--like they are normal, albeit small. I used to get so bored when I was home alone with the kids when they were babies, because I'm not used to sitting still. And then I realized, I don't have to sit still. I'll just get the stroller, make them walk with me. Walk around them and do what I need to do while they play on the floor.
Now, don't get me wrong. I got down on the floor with my kids and kissed their bellies and all of that. Just not for long. And I like holding other people's babies--or at least I like holding the babies of people I like. I'm no huge baby-lover, no overdeveloped maternal instinct here. But I love my kids. And maybe more importantly, I like them.
I just figured they would like me too. No matter how I was--because I'm their mom.
I could have felt guilty, but at some level I knew it wouldn't do any good. And now here they are--these kids who play games like "office" and "spinning" and pretend to make coffee or just otherwise do things that mimic me. Or, even better--they ACTUALLY do things that I do. Lenny reads the weather page every morning. She understands football. She knows how to flex her biceps. Both of my kids know how to make coffee. Augie likes to wear nail polish.
You know, every time I hear friends complain that their husband just comes home from work and plops down on the couch and turns the game on, I want to say (besides, um, that's what I do...), you know, someday your kids will look back fondly on those days their dad would watch the game from his special chair. They will remember the chair, and what brand of beer he drank, and they will remember trying to get his attention and being playfully batted away, and you know what? Those memories are just love in disguise.
But I still live with this secret--this guilt that never was, this thing that sets me apart from all other young mothers in my situation.
I never, not for one day, felt guilty that I had cancer.
I felt many things: terror, grief, anxiety, depression, confusion, anger. But not guilt.
There is some unwritten rule that if you have cancer as a young mother, you are supposed to do everything after diagnosis "for your children." You are supposed to stay alive for them, go through chemo for them, protect their feelings above and beyond your own.
But I didn't.
Of course I got lost in my own sadness when I thought of not seeing them grow up, when I wondered if they would ever remember me. BUT THAT IS NOT GUILT. In some ways, that is selfishness. I wanted to see those things, I didn't want to miss out, I loved them so dearly and desperately. It broke my heart to wean Augie so violently.
But it didn't make me feel guilty.
I think I've just broken about 10 breast cancer taboos by admitting this. We breast cancer survivors are supposed to be martyrs in a sense, living just to show others how to be strong or brave or "beautiful anyway" or some other shit. But all we want is what everyone wants, and that's more time to be ourselves in the world. And if I was a hardass mom before, well, I'm sure as hell still going to be one. I had my moments of crawling into bed with Lenny to feel her little body next to mine, when I was in my darkest place and I wondered if I would die. But I didn't do that out of guilt.
I remember how guilty I felt over not feeling guilty. I asked my mom if there was something wrong with me, to feel the way I did, to feel like I wanted to avoid my kids because it was too painful to be around them at the beginning, when I was supposed to be hugging them 24 hours a day. And, as all good mothers do, she told me a story. I will not do it justice--she would have to tell it to you herself. I suggest you ask her if you ever get the chance--it's really pretty fascinating.
She reminded me of something that happened when I was four years old, the same age as Lenny was at my diagnosis. My mom was 29, and she decided to have a hysterectomy. She had had issues for years, had been anemic her entire adult life, and she was happy to have the operation. My dad had a vasectomy years before that, so there was no question of wanting more kids. She went in to the hospital, and told us she would be home in a few days.
My mother bled to death from that operation.
She hemorraghed internally following the procedure. She realized she was dying--she saw the white light, talked to the ancestors from hundreds of years ago, was happy to go. Then, she thought of us, and wondered what would happen to us, so she screamed.
Nurses came in, and told her she would be fine. Her doctor, a man that many women in that feminist era didn't like because he called women honey and things like that, came in and asked what the hell is wrong with that girl? Nothing, doctor, she's just scared. Yes, something is wrong with her or she wouldn't be screaming.
And she flatlined, and he stripped the veins from her legs and sewed them into her stomach, induced a coma, and saved her life.
She was in the hospital a long time. Even once she got home, she was bedridden for months. My grandmother took a train 65 miles to come live with us so my dad could work. She cooked our meals, bathed us, walked me to preschool through the blizzard of '79. I took naps with my mom, but otherwise, I rarely saw her or talked to her. I knew she was there--but it was so different.
Finally, she got up and about. I threw something at her, angry for all the time she was "away." And she told me, enough of that. Mom's back.
She stopped telling this story long enough for me to ask if she felt guilty during those months. She told me that she never felt guilty, because she had to do what she needed to do to get better and live and be there for us, and to be able to be herself. She told me something along the lines of a phrase I learned from another cancer survivor 40 years my senior: You are the most important person in your house right now.
And that's unfair. But life is unfair. The kids will get over it. Gabe will get over it. I told myself that as I walked away from everyone on chemo days, went right upstairs, got sick, took to bed. I told myself that as I got skinnier, as I fought with doctors, as I telecommuted when I hadn't slept for five minutes in five nights. I told myself: Don't feel guilty. You need to do what you need to do to get through this in order for anyone to get over it. You don't have time to feel guilty.
I must have been remembering this story one day at the tail end of chemo when I made the decision to tell all of the people who had generously made food for us for four months that I was ready to cook for my family again. I went into the kitchen and started to get dinner ready. I was bald, and I had no eyebrows. I was in menopause and I had hot flashes every five minutes--literally. It just got worse with the oven on. I had scars all over my left side and soon I would have radiation burns as well. Lenny came in and asked me what we were having for dinner. Lasagna again?
No, I said. I haven't decided yet.
She looked at me strangely--almost suspiciously. She pouted and said, well, I don't care. I'm not hungry anyway.
I told her not to talk to me that way. I asked her why there were rugrats in my kitchen. I said:
And she continued to pout, but I saw that glimmer in her eye. I saw her skip into the next room.
There was never any need to feel guilty, because you know what?
I'd never left.
(For those who don't know--I have started a second blog, in order to give myself permission to write about the random things in life rather than the cancer things. You can now also find me at LiveChickenOnSix.)
Tuesday, September 4, 2012
You spend most of your time being hopelessly wrong about everything.
I took my daughter to school today. I recorded my feelings about leaving her at her first day of first grade. I lamented how sad her brother seemed to be that she wouldn’t attend Montessori school with him anymore. I shed a tear or two. I wished she would have looked up to say goodbye as I waved to her at the same time that I was glad that she was so greedily reading the new workbook at her desk.
I did what parents do. I thought about milestones, new phases in life. I acknowledged that in a blink of an eye that child will be in high school. I considered how absurdly fast six and a half years have gone, and part of me would have liked to hold that image of her tiny six year old body at her desk for a long time.
But only a part. The rest of me is happy for her and glad that she is big enough to do some things she couldn’t do for years, because I know that’s what she wants—to get older, all the time. I know that being little has its disadvantages. I’ve learned some things, perhaps due to the things that happened to me as a child. When traumatic things happen, you either choose to forget how you felt at the time, or your feelings are imprinted so strongly in your brain that it would be impossible to forget them, no matter how long you live. I am in the latter camp, and I can honestly say that I remember at least some of what it felt like to be a child.
It was hard. Now, don't get me wrong. I had a mostly happy childhood, in spite of everything. I was loved and had friends. My home life was troubled and we didn’t have much money but I was never hungry. I was girly, I was a tomboy, I was a lot of things. I worked. I shielded other people from difficult truths and from my own emotions. I kept a lot to myself. I learned how to say goodbye with grace—to people, experiences, old ways of being. But I had no control over what happened to me, and I remember that. I didn’t make big decisions. There was a world and I lived in it, in a small way. I was important, but not in charge. There were so many things that I didn’t understand, that adults didn’t want me to understand.
I don’t remember my first day of first grade, or of any grade. And that is not because the years have taken their toll with my memory. It’s because those days were just not that important to me. There are many, many other things that I do remember. Lenny might remember this day. She might not. Her brother might quickly get over her absence in his daily life. He might not. Their parents chose their reality, but could not choose how they felt about it.
Yesterday, the kids played so beautifully together for hours that I felt that something important had shifted. I figured that those 10 days together in the north woods, with no other kids to play with, must have caused it. And then I heard crying. Mommy, Lenny won’t play with me anymore. I want someone to play with me. And I walked into my daughter’s room, to see her reading on the floor while she ignored her wailing brother. She looked at me half-defiantly. I just want to be by myself.
And I know that—I have always wanted that, birth order be damned, I’m the younger one and I’ve been trying to be alone for 37 years. I’ve wanted to be alone as a child, a teenager, a young woman trying to figure out how to be in “adult” relationships where people actually want to be around you all the time, as a mom. I manage my family’s schedule such that I am by myself (usually exercising—walking, spinning, strength training—such good excuses) for at least two hours every single day. I got it, I understood her.
And I took the book out of her hand. Lenny, this is the last day that you have to play with your brother without worrying about homework or your school schedule. You will play with him all day.
I was being a tyrant, making decisions for her that I knew went in opposition to what she wanted. I expected a fight. She just smiled, summoned up that coddling tone of voice that makes her sound like a grandmother and said, OK Augie do you want to play marbles? I’ll let you have the shooter.
Because she understands. She and her brother have been figuring out how to balance their different temperaments all their lives. They are only successful at it because they love each other so much, and because they both understand, she more than he, how little time they have to be together.
He knows, to some extent. He talks about not seeing Lenny every day, and we assume he means because she is no longer at his school, but really, he means, someday I know we will live in different places. So he grabs what he can. He wants her next to him when he’s eating a snack. I see him look at her lovingly and then check himself, right before he puts her in a headlock. He says Lenny I am trying to wrestle with you.
I am trying to love you.
So she elbows him in the ribs, just like we taught her to do, and loves him back.
They know about the arc of life, and its complexities, just like we do. It’s just so hard for us to admit that they know. So they shield us from their understanding.
Gabe had offered Lenny a test run of our new routine, telling her on Sunday night that we could wake up early (7, maybe) on Monday morning and see how long it took to walk to the bus stop. I have been having trouble sleeping for the past week, perhaps worried about dropping my small child off with drivers I don't know, entrusting three different sets of parents with her after school care. I woke up around 3:30 yesterday morning and was restless. Around 4:00 I woke Gabe up, which is easy enough to do. Around 5, he emerged from our bed naked and went to the bathroom. He came back right away, looking petrified. Lenny’s awake. Both of us thought, oh no, did she hear us? And I asked what she was doing.
She was sitting quietly in bed reading The Secret Garden, one of those classic children’s books where the protagonist is an orphan with a total bullshit situation, waiting for us to wake up so we could walk her to the pretend bus. She didn’t mention hearing anything. She didn’t mention her dad walking naked in the hall.
She spared us, like so many other times. Like the time when she asked me where babies came from, when I was in the middle of writing a piece for work at home. I decided to take her literally. She didn’t ask about sex, after all. She wanted to know how a baby could be inside a woman’s stomach and then emerge into the world. I told her about the uterus, and that babies are born through women’s vaginas. She thought I was insane but ultimately decided I couldn’t make that shit up. She reasoned that because she had a uterus and vagina, she could one day have babies but her brother could not. I said he could have them in the sense of being a daddy to them, but he could not give birth to them like she could. So she asked, so what does the daddy do? He just has to marry the mother?
And I fed her a snack, not yet ready to get into the whole thing. Because what will I say? I’m no good at telling lies. I can’t be one of those parents who talks about fallopian tubes and zygotes and sperm as if any of that bears any resemblance to what a kid wants to know. I can’t be one of those parents who says sex is something you do when you’re an adult, when you’re in love, a man and a woman blah blah. Because none of those things are true. I remember learning the facts of life, from one of those books that my mother read to us. She allowed us to laugh at the funny parts, which was pretty much all of it. I was maybe 3 or 4, my brother 6 or 7, the same ages as my kids are now. My mom answered our questions—the ones we felt we could ask. I never asked the only question I wanted to ask.
Is that it? There has to be more to it than that, right?
Because I knew that I was a child, and my mother was a mother, and she would not know how to answer that question right then. Just as Lenny knew to pretend to go back to sleep and wait a few hours for the test run. Just as she will probably never ask about the rest of the facts of life—we will just have to offer the information. She doesn’t really know, and yet—she does. She’d like to spare us the trouble.
She knows that adults get to do things kids don’t get to do. I always say, who makes the rules? And she says you do, but I make the rules for my guys (stuffed animals). She believes this to be true. She believes I make the rules for Gabe, though I let him make some of the rules some of the time. And that’s what being a parent is—making the decisions, taking that burden on yourself. My daughter wasn’t sad to go to a new school—how could she be? She has been in daycare since she was three months old. I was not letting go of her and entrusting her in someone else’s care for the first time. She made it clear that at first she did not want to go to this school for “gifted” children, as she wanted to be in school with her best friend. Then she changed her tune, saying she wanted to go but not for the whole 8 years. And now, she isn’t saying that anymore—and it’s not because of her new-found love for the place.
She knows she lost. We made a decision for her, and she had no say in it. She had to take the test and pass it, she had to get through the crazy lottery system. But then, we signed the papers and she couldn’t do a damn thing about it. We aren’t alone. No matter what you do—stay at home until they’re six, homeschool until they’re 17, private school, public—YOU are making that choice for them because you feel it is the best one. Parents can tell themselves that their children should make choices, and that’s right. Small choices are empowering. And they are the only ones children get to make, as we shape their lives for them because we know better, because it is our job.
We switch their school or move to a new house in a new town and they see their friends less because they cannot control their own schedules or drive 30 miles. They get over it. Or do they? Lenny still remembers her best friend from her old daycare—and she hasn’t seen her in four and a half years.
Augie will get over not seeing his sister all the time. Or will he? He will accept it, of course, but it will make him sad and his sadness will be real, not a three year old sadness but the sadness of someone who understands that even your most beloved people leave and live their lives without you.
I know I sound dramatic. I should say that I do not believe that children are like adults, or even that teenagers are like adults. But I also don’t believe that childhood is lived the way that parents think it is lived. We think that kids don’t know that their childhood is short-lived—but they do. They know just about everything we know.
When I write a facebook status about my three year old telling me he will listen to me when he’s six, dozens of people "like" it. It sounds so cheeky. But he was serious. He was saying look, I know I won’t get away with this forever. When I’m six, I will be twice the age I am now, and maybe then I’ll start to mind. Of course, he won’t—not really. I never did. I never listened to a thing I didn't want to hear. Now, my parents might disagree. I was very well behaved. I never talked back. But WHY NOT? Because I knew that if I had a track record of being good, I could get away with more later. I did that at home, and I did that at school. At home, I minded, and I did well in school, and I didn’t cause trouble. So I got to drive my mom’s car, and be left alone in the house and go to parties. Hell I got to go to my boyfriend’s parents’ lake house for my 16th birthday—JUST THE TWO OF US. At school, I studied and wrote excellent papers and served as vice president of my class and volunteered—and so I got to wear what I wanted, and I never got in much trouble for ditching, and when I stopped trying entirely I was forgiven.
I can see what Augie will do, because I have done it myself.
How different am I today? How is adulthood that different from childhood? I think it is different in that we learn to keep things to ourselves, we gain coping mechanisms to manage our losses. But the things there are to keep, and the losses--those are really all the same. I still think about my best friend from 1st grade, who moved to the Philippines. I knew when she left that she would fade into the world and I would never know anything about her again. I wrote a story about her, and it won an award. I was seven.
When Augie tells me with pride that he can finally pump his legs while swinging, because Lenny told him to close his eyes, and he does that to concentrate but also because he says he feels like he is flying, I smile. I smile not because he is cute, but because he is RIGHT. When he gets stir crazy and needs some exercise and gets aggressive and out of control, I lose patience with him not because I don’t understand him but because I DO, and because I have learned how to tame myself and I don’t always know how to teach him. When a stranger stops me when I’m ordering ice cream and grabs my hand and says “my god you have beautiful children,” I look at them and not at her when I say thank you. I remember hearing about my hair all my life and how the attention made me cast my eyes down, and I want to say to her “you know, they are short, but not deaf. Why are you saying that to me, and pretending that they aren’t even there? I don’t have children at all, not really. They have themselves.”
They have themselves, and their experiences, which we are powerless to change, no matter how much we’d like to change them. Sometimes I think about the day when I will have to explain to Augie that I had cancer, and what that is, since he has no idea. He was just a baby—it would be like telling a child he is adopted, as if that should be relevant information in his frame of reference. But the thought lingers with me more and more.
Augie has been talking about death. He asks, how old will you be when you die? How do we die? When I die, I won’t see anyone anymore, right? He sits in the car on a long road trip with his “mama” in his mouth, and then he takes it out and asks, out of the blue, “When I am ten, will I die?”
These are questions that I do not answer correctly. Perhaps if he asked about a pet dying, or an old person, I could respond well. But he asks about himself, and I cannot bear it. I tell him not to focus on dying. We all die, but hopefully not for a very long time. We are all young and healthy now. And he nods and looks down, completely dissatisfied with what I am telling him. I ask who has been talking about dying at school, as if he couldn’t have had the thought in his own mind. He makes something up to pacify me. Gabe tries to help, and tells him that there are three ways that people die: They get old, get sick, or get in an accident. Lenny chimes in that you could get struck by lightning, which Gabe classifies as an accident. Then she says, or you could get sick, like…
And I shoot my dagger eyes at all three of them and say ENOUGH. WE ARE DONE WITH THIS CONVERSATION. Not even daring her to finish the sentence. She realized, I’m sure, that it was me she was sparing. After all, she couldn’t be sparing Augie. He let it go, then ran up to me, grabbed my face like he does when he wants a kiss, and said “hug.”
I don’t know why I worry about telling him. He already knows.